Wednesday, April 23, 2014

Donate Life!

April is National DONATE LIFE Month!

On my 33rd Birthday, a little over a month after my double-lung/heart transplant, Ryan and I visited my well used, well loved and very diseased organs. I was so grateful they had fought so hard for me but also so grateful that I had beautiful new organs sustaining my body.

I know I haven't been an active blogger for a long time but in honor of National Donate Life month, I wanted to share some thoughts about my donor with you. People often ask me if I know who my donor was, if I know anything about them or if I have been in contact with their family.

There are very strict privacy policies with organ donation and there is a certain protocol to follow. First, the organ recipient can write a letter to the family and send it through the hospital to the family. If the family wishes to respond or contact the recipient, they can do so. I was never given a name, an address or any information whatsoever about my donor or their family.

I chose to write a letter of gratitude to my donors family. I had absolutely no expectation of a response and did not write the letter to get a response, I only wanted to express my love and appreciation for the gift I had been given. I pondered what I would say in my letter every day, but waited until I felt prompted that it was the right timing for me and for the family to actually write the letter and send it.

A few months after I sent the letter to my social worker at Stanford, I got a call. I had just walked in the house, followed by Harrison, and my arms were full of grocery bags. I didn't recognize the number on my phone and debated about picking it up but felt I should. A man with a hesitant and kind voice asked for Sharlie. I responded that I was Sharlie and he told me that his wife had donated her heart and lungs to me.

It was a beautiful, but very difficult call. I wept for hours after hanging up the phone. I was filled with gratitude and also such deep sadness that this precious woman was gone. I wanted above all to respect the privacy of this sweet family so I did not ask a lot of questions but simply let the man tell me about his wife.

I think about her often, the woman whose heart beats inside my chest and whose lungs fill me with oxygen. My donor's husband told me that his wife was a rower. He said I may get the urge to wake up at 4:00 in the morning and start rowing on a machine because that is what she did every day. I row several times a week now, nearly every day and it is a prayer and a meditation. Many times while I have been immersed in thought while my body fluidly rows, tears have fallen down my cheeks. Maybe others in the gym think I am crying because it hurts so good, but it is really just my thankfulness leaking out my eyes.

Before this National Donate Life month is over, I urge you to consider becoming an organ donor. There are some misconceptions about organ donation. Find out the facts! My donor's husband told me I should never feel guilty or unworthy that I am here and his wife is not. He told me they had discussed organ donation and both decided that if anything ever happened to them, they wanted to give the gift of life. He told me that his wife would be so happy that I was living an active, joyful life. What a generous gift, a gift I will never be able to repay, but a gift I will strive to be worthy of every day by living my best life and loving every breath I take.

Below is the letter I sent to my donor's family. I did not intend to share it, as it is very personal. However, if it inspires one person to become a donor, it will be worth sharing.

To the family of my organ donor,

It is the night before
Thanksgiving and I simply can't go to sleep without writing to you. I have
struggled to know how to go about composing this letter, worrying I won't say
the right thing, that my words will be inadequate, or that receiving this
letter will only be a reminder of your loss and cause you further suffering.
However, after all these months, I must attempt to express my profound
gratitude to you. There is suddenly an urgency and I must not delay actually penning the words that have been mulling in my head and in my heart since the
moment I woke from my double lung/heart transplant on February 17th.

I was born with Cystic
Fibrosis in 1979 and have never known the ease of taking a deep breath. I know
it's not normal to be keenly aware of pulling in enough oxygen with each
inhalation to sustain the body, but that is how I survived. I willed my lungs
to keep breathing, to keep fighting. Despite having one of my lungs completely
collapse in 1997 and several other complications, I beat many odds. I remained
ever hopeful and have always been filled with a love for life. I was married in
2004 and we were miraculously able to have a baby. My lung function
hovered dangerously low but my health stabilized. Being a mother is my purpose
and filled me with a ferocious will to live.

Because Cystic
Fibrosis is a degenerative disease, despite my vigorous efforts to slow the
progression of my lung damage including hours of treatments every day and
frequent hospital stays, I reached the point where my doctors told me my only
option to live was getting a new pair of lungs. I required full time oxygen
supplementation and was growing very weak. Taking care of my son was
becoming increasingly difficult.

I was accepted by
Stanford for transplantation. I wanted to live. I was conflicted though. Even
though I didn't know you, my thoughts were with your loved one and with you.
From the minute I was accepted by Stanford for transplant and was declared
active on the waiting list, you were on my mind and in my heart. I ached for
you. When we received the call informing me a donor match was found, my husband
and I fell to our knees. We fervently prayed that you would feel comfort and
peace and that you would somehow during your despair, feel the enormity of
our eternal gratitude and love for you.

These past nine months
have seen the fulfillment of so many dreams. A year ago I couldn't walk up even
one step without having to pause to catch my breath and now everyday I can
chase my son up the stairs! I am able to volunteer in his kindergarten class
twice a week. I asked him recently if he remembered when mommy had to wear her
oxygen and was always super tired and he looked at me, smiled and said he
didn't remember that. His whole life will be different with a mom who can keep
up with him and give him the experiences I always dreamed of giving him. A few
more dreams realized were a recent trip to Paris with my angel mother for the
first time. As I climbed the steps of the Eiffel Tower, I wondered if part of
me had been there before. I was also able to complete a 32 mile bike ride to
raise awareness and money for cystic fibrosis and I ran my first 5 K alongside
my older brother and husband. My world is completely different. I love my new
lungs and my new heart. They changed my life. They saved my life.

Not a day goes by that
I don't think of you and send you love and gratitude. I pray for your loved one
every day as well and will strive to live worthy of the gift I was given. I
hope that they can look down on me and see that I am not taking one breath nor
one heart beat for granted. I hope they know that everyday I will try to find
ways to lift others, give freely of myself, and be generous with my time, my
love, and my means in their honor. I feel an incredible responsibility to live
up to their legacy and it is a responsibility I don't take lightly.

9 comments:

Hey Sharlie! My name is Cameron Von St. James and I had a quick question for you! I was wondering if you could email me at your earliest convenience at cvonstjames AT gmail DOT com :-) I greatly appreciate your time!!

I just want you to know that this post touched me more than just about anything I've ever read. If your donor's family ever reads this, I hope they know that their loved one has not only forever changed your life Sharlie, but mine and many, many others in the most profound way possible. I'm signing up today to be an organ donor as well:)

A brief Introduction...

Ryan and I were married in 2004. We wanted to start our own family and prayed fervently for the faith and strength to experience this miracle despite my health challenges with Cystic Fibrosis. Our prayers were answered and we were blessed with a precious baby boy!! Harrison was born in 2007.

I was recently accepted by Stanford as a candidate for a Heart/Double Lung Transplant. Again, we are praying for the faith and strength to experience another miracle and are filled with hope as we wait for this great blessing.